Visual
impairment in intellectually disabled children and (young) adults: Train the
trainers - a pilot study in South Africa

Focus: School Years

Topic: MDVI

Marlies Raemaekers

In the last decade it has become
clear by activities of the Visual Advisory Centre of Bartiméushage, and later
on confirmed by the outcome of the scientific research in the Netherlands on
the prevalence of visual problems amongst persons with an intellectual
disability, that almost 25 % of them are also visually disabled according to
the standards of the World Health Organisation. This is a very serious message.
What makes it worse is our experience that in most cases the visual disability
hasn’t been recognised.

How can this be explained?

These persons belong to what we call “the non
complaining group”: they won’t tell you, if at all able to speak, that
they can’t see clearly because they aren’t aware of the standard. They
aren’t aware of the fact that their reference group has lesser or no
problems. If my arms become too short to read or see pictures clearly in a
book, I will definitely grasp for reading glasses. Most intellectually
disabled persons don’t know that they sometimes can be “cured” by getting
glasses.

Most visual problems as you know aren’t directly
visible from the outside. Abnormalities of the eye will obviously point in
the direction of visual problems. But if the visual malfunctioning arises
from inside the eye, the optical nerve or from processes in the brains the
eyes can still look beautiful and make regular movements. Absence of
ocular abnormalities doesn’t guarantee a good visual acuity either.

Many intellectually disabled persons are dependent on
other people: parents, family, and caregivers, also for the interpretation
of their behaviour. Most of the time the impact of the intellectual
disability is so dominating that the signals for a visual disability are
seen as consequences or as elements of the intellectual disability. For
instance: a person with an intellectual disability that cannot read is not
uncommon. But it needs to be checked if there is perhaps a reason in his
visual functioning for the non-reading. Or: if I regularly stumble against
obstacles, I will surely hear to look out or to use my eyes. When the
disabled person is stumbling it will often be interpreted as caused by his
motor movement pattern.

In case the signals are recognised and an appointment
is made for the ophthalmologist, the next problem arises. Persons with a
severe intellectual disability are often very difficult or impossible to examine.
Most examination tests ask for active participation of the patient. But
these persons don’t understand the instruction and their participation to
the examination isn’t very high. Hence a false or non-reaction to a
question is not at all a validindication
for a visual impairment, nor is it a confirmation of adequate visual
functioning.

Except expertise you need a lot of patience and time
in order to be able to do the assessment of a person with a severe
intellectual disability. I don’t really know the situation in each of your
countries, but in the Netherlands the regular ophthalmologist only has
some minutes per patient. I think you can imagine that this is a far from
ideal situation for examination of a multi-disabled person.

All these factors explain why
most people aren’t aware of the presence of visual problems in persons with
intellectual disabilities and the influence of this extra disability on daily
life. Being aware is the basis for understanding and a possible treatment. It
is certainly necessary for making adaptations in the environment and for developing
an adequate way of making contact. A pro-active approach of the multiple
disability increases the quality of life of the disabled person.

During the last decade a lot of
persons with an intellectual disability in the Netherlands have been assessed
on the prevalence of a serious visual problem. At the moment the visual problem
was defined, we explained the impacts of this disability on every day life and
offered advice on how to handle. We published and presented our way of
examination and the results on conferences like this and especially on
conferences on intellectual disability. A colleague organisation in South
Africa, Pioneerschool in the Westkaap, then asked us to disseminate this
specific expertise on the assessment of and the advises on multi-disabled persons
in South Africa.

At the end of the last century we had our
first orientating contacts. Our most important aim was to create a basis for a
joint venture between schools and centres for multi-disabled children and
adults in the Netherlands and South Africa (Bartiméushage and South African
Schools for the Blind), educational institutes (Free University Amsterdam and
universities in South Africa) and as a connecting link between them all the
South African National Council for the Blind (SANCB). Why this construction?

One of the starting points was to connect our
specific expertise on the assessment of and the advice on persons with
severe multiple disabilities to the already existing knowledge and
expertise in South Africa. Our specific expertise is complementary and has
to be adapted to and integrated into the South African culture and
infrastructure.

The transfer of knowledge once or twice is like
adding a drop in the ocean if we do not at the same time take care of
securinganddisseminating this knowledge. For that reason we adopted the
idea of “train the trainers”. The first training will be given by
professionals from Bartiméushage in conjunction with the SANCB. Bartiméushage
will be responsible for the content of the programme (of course based on
the demands of the SANCB as the speaking voice of South Africa). The SANCB
will be responsible for the organisation of the training, the logistics
and the imbedding in existing educational programmes. Even more important is their
responsibility for the concept of this programme: the small stone
originally thrown in the lake by professionals from Bartiméushage will
lead to a wide amount of new circles of expertise spreading out all over
the country.

The content of this training will be binomial: first,
transfer of expertise from trainer to trainee and second, training of the
trainees to become a trainer themselves. The trainees will start
disseminating their new knowledge and each of them becomes thereby a new
centre point in the training of new trainers. The original trainers from
Bartiméushage will stay backstage for support, feedback, if necessary
adaptation of the training programme and refresher courses. To reach as many professionals
and caregivers as possible the knowledge should be available and easy
accessible. Ideally it should be integrated in the educational programmes
of educators, psychologists, nurses, ophthalmologists etc. Educational
institutes like universities have a significant role in this dissemination.

Knowledge and expertise is not a static fact:
permanent testing and mutual exchange is of great importance. This is
needed between the centres for multi-disabled people, between the
educational institutes and between centres and educational institutes.
This mutual exchange will finally increase the quality of care and
services for persons with multiple disabilities.

The SANCB, with all her networks and the
infrastructure for education in South Africa, is the ideal partner for
developing this project and for the joint realisation of our goal.

Back to the first orientating
contacts.

Professionals from Bartiméushage
and the Free University Amsterdam started on request of the board of
Pioneerschool with a course for staff and educators from the Schools for the
Blind in de Westkaap province. It was a short introduction to the essential
elements of our way to detect visual problems in children and youngsters with
intellectual disabilities. Information was given on important syndromes,
behavioural signals that could be an indication for visual problems, the
effects of specific visual disorders on everyday life and of compensating
mechanisms. Several intellectually disabled children suspicious of visual
problems were examined observed by ophthalmologic nurses. In this way we could
demonstrate our methods. At the same time we got information about the existing
level of expertise of the staff of these schools and feedback on the necessary
adaptations for the South African situation.

We then had a meeting with the
responsible officials of the Department of Education and Health to see if our
way of working could be adapted to and, if possible, be implemented in the
South African situation. The accent of this meeting was the policy on care and
services for people with visual or multiple disabilities developed by the
Department. The Dutch model of outreaching activities was presented in which we
stressed the importance of the combination of having expertise centres from
where multidisciplinary teams can spread out over the country to examine people
and give advise and information on prevention, possible treatment and
adaptations in approach and environment.

After that we went to the
University of Potchefstroom on invitation of professor Hans van der Merwe. He
had organised a week on the theme “developments in care, services and support of people with intellectual or
multiple disabilities. The courses were given by professionals from Bartiméushage
and from the Free University Amsterdam. Most of the audience were students or
former students but there were also parents and directors of schools and
centres for intellectually disabled people. The programme was based on the same
elements as the Westkaap programme, but with more accent on the theoretical and
scientific foundation.

Our last contact in South Africa
was a meeting with Dr. Henoch Schoeman from the SANCB. We discussed with him
his ideas about such a joint venture, the possibilities of realisation and the
necessary funding. All participants in this co-operation would consult their
own organisation to get sufficient support, including the funding, for this
project. From the fact that I am here telling you about this initiative you may
conclude that we succeeded in starting it.

The project itself.

What is the purpose of the “train
the trainers” project?

The purpose of this project is to
establish greater awareness and understanding amongst educators, trainers and
other professionals regarding the nature and needs of visually impaired people
with intellectual disabilities or intellectually disabled people with visual
impairments. The first, visually impaired people with intellectual disabilities,
is important because of the fact that more and more children with a visual
disability asking for support from the organisations for people with visual
impairments are also intellectually disabled. The latter, intellectually
disabled people with visual impairments because of the many intellectually
disabled ones with non-detected severe visual impairments.

What is the strategy of the
project: “Train the trainers”?

The focus of the programme is on
educators and other professionals active in the field of visually disabled
people with intellectual disabilities or in the field of people with intellectual
disabilities. The ideal is that after the completion of the whole training
programme they will be equipped to train other educators and professionals and
also to support the parents, familymembers and caregivers of the people
concerned.

The material will be presented in
a modular and outcome based format. Participants will be able to build up
credits from the available modules. There will be a number of core modules,
which all participants have to take, and elective modules from which they can
choose, according to their interest and area of functioning. Some of the
modules will be presented during periods of contact training in South Africa,
and some through distant learning and training. A module will only be deemed
completed if the outcomes are achieved and the trained trainer is able, as a
final outcome, to successfully convey the acquired knowledge to other educators
and professionals.

The first group of trainers will
be a multidisciplinary group consisting of educators and psychologists from
identified schools for the blind as well as schools for the severely
intellectually disabled learners. The different professional background of the
trainees, some experts on the blind – some in the field of intellectually
disabled people, makes that both groups can benefit from the expertise of each
other. It promotes the interaction between the trainers as experts on the
multi-disabled and the trainees coming from the singular field and enhances the
integration of the knowledge.

Ophthalmic nurses working in
hospitals and clinics in the areas of the identified schools will partly get a
parallel programme on performing visual screening. For the pilot we’ll also
welcome relevant officials from the Departments of Education and Health in
which districts the identified schools stand.

The basic training will start
with modules for all trainees and will then be divided into two parallel
sessions, one for educators and other professionals, the other one for
ophthalmologic nurses and optometrists.

The training group of educators will be
trained in becoming aware or more aware of the signals indicating a possible
visual disorder in people with an intellectual disability. For instance:

at first of course the visual cues like differences
in eye movements: uncontrolled eye movements, no search for eye contact,
looking at everything at short distance, avoiding of shining light, using
touch instead of vision, giving a startling reaction when an object
suddenly appears.

Visual-motorial cues: stumbling, hesitance to walk on
big height differences and shining
surfaces, having problems with picking things up

Behavioural cues: no interest in pictures, listening
to own sound or humming, self stimulating activities. These behavioural
cues are often seen in children with both a visual and intellectual
disability (remember the high percentage of prevalence in this group). But
we must always be aware of the fact that there is no unambigious causal
relation. They have only to be seen as serious indications for a visual
problem!

The training group also needs to
know the effects of this particular visual disability in the daily life of this
particular person. What does it mean when this boy has a tunnelvision? Can he
still go into the traffic? Why is this girl with Retinitis Pigmentosa always
stumbling in the evening? Does this child need big characters or small ones?
Does he need strong light? What distance does she need between offered objects?
How do I have to offer things to her so she uses her visual abilities best?

The third element of the training
is the development of the expertise on communication with, adaptations for and
the detection of the compensating mechanisms of this particular person. What is
the best way of making contact with this boy? How do I announce myself to
someone who can’t see me? What colours shall I use for instance for clothing or
make up? What helps him use his visual abilities as optimal as possible? How
can I join her own way of dealing with obstacles? Especially observing children
learns us a lot about the way each of them has developed his or her own way of
solving problems.

The training group of ophthalmic
nurses will also be trained in becoming aware or more aware of the signals
indicating a possible visual disability in persons with an intellectual
disability. Furthermore they will practice the use of elementary tests for
screening the visual functioning of the person. The purpose of this training
will be to get expertise in adequately selecting the persons with a serious
suspicion of a visual disability needed to be seen by the ophthalmologist. The
definite diagnosis has of course to be made by the ophthalmologist. But what we
try to accomplish is a thorough pre selection: only persons with a serious
suspicion of a visual disability or a possible need of glasses should be send
for further examination. So no precious specialists time has to be spent on
persons with normal or sub normal visual functioning. Even more important
should be that no person with a visual disability will be deprived of necessary
treatment and support. The idea of this part of the training is based on the
results of the course for specialised GP’s for people with an intellectual
disability. Professionals from Bartiméushage trained them in using simple tests
to discriminate between persons with normal or subnormal visual functioning and
those suspected of visual problems.

In both groups much time will be
spent on dissemination of the acquired knowledge.

The programme will be regarded as
a pilot project, which will allow the involvement of small numbers of trainees
and the making of changes to the programme as the need arises. This project
will run in one or two provinces of South Africa, depending on the total number
of trainees and the possibilities to implement the acquired knowledge. It will
be obvious that much of the success of this pilot will depend on the
co-operation of the identified schools for the blind and the implementation of
this knowledge into educational programmes.

A task group will be formed
consisting of people from South Africa and the Netherlands. This group will
monitor the training and evaluate the trainee’s ability to convey the acquired
knowledge to other educators and professionals. They also will, if necessary,
adapt the developed standards for admission to the training, based on foreknowledge
and experience of the trainees.

With the assistance of the
relevant departmental officials and trained trainers a strategy will be
developed to reach other Education and Health districts in each of the two Provinces
covered by the pilot. To make the training an ongoing activity it is necessary
to be assured from the support of policymakers and officials. The SANCB will be
the interacting link.

After the successfully
accomplished training the new trainers will start disseminating their knowledge
to other professionals and start supporting parents, family members and
caregivers. Over a period of two years they will be monitored. During that
period the original trainers from Bartiméushage and the VU will operate as an
electronic helpdesk by giving as much professional support as needed.

During the evaluation phase a
workshop will be arranged for the participants of the first training to
evaluate progress and determine the level of success. From the “lessons learned”
a Policy Document will be developed which could eventually be used by other
provincial Departments of Education and Health. If necessary, the training
programme will be adapted or revised, and registered with one of the South
African Universities for the further development and training of educators and
other professionals in the whole of South Africa and in the SADC region.
Bartiméushage and the Free University Amsterdam will also offer the possibility
for psychology students or ophthalmologic nurses to follow a more intensive
programme in the Netherlands.

The overall aim of this project
will be the concept for a programme of exchanging knowledge from Bartiméushage/
the Free University Amsterdam that can and (hopefully will) be used in other
countries all over the world to increase the quality of life of persons with a
(visual and) intellectual disability.